While endometriosis clearly has many evil powers (being the super-villain that it is), for me the worst is the way that it can make you feel totally lost and alone. Like you have this terrible burden to carry that nobody else cares about or understands. I’ve always been a pretty sociable person with a close network of family and friends, so I’ve been pretty amazed at the extent to which my endometriosis diagnosis has tested and strained almost all of my relationships.
For about six months after my laparoscopy I shut myself away from the people around me, and was feeling some pretty complex things that I never would have expected of myself. This is hard to admit, but I resented my friends for their healthy and care-free lives, for having no barriers to their future hopes and dreams, and for showing what I deemed to be a lack of interest and what I was going through. So I didn’t want to be around them and I stopped going into the office or attending social events. I just felt angry all the time.
About five years ago a close friend of mine was diagnosed with a brain tumor, and I couldn’t help comparing the support and sympathy she received for years afterwards with my own situation. That is so terrible isn’t it? She had many visitors in hospital and during in her recovery, loads of cards and messages of support, and unwavering understanding from her employer. I visited her loads of times, sent loads of post, made her CDs of her favorite music for her chemo sessions, and drove her around as her license was revoked. I even ran Cancer Research’s Race For Life for her- and I bloody HATE running! She has made a full recover now and is back to living her normal life, which is so great.!
In contrast though, I received no cards when I was diagnosed, or visitors, or people asking me about my condition when I bumped into them. It was like my world had crashed and burned, but nobody had noticed or cared. They all just carried on with their lives as if everything was normal. Cancer friend never event sent a text. Funnily enough I stumbled across this article by Nicole Milachi (who co-founded Endo Worriors), and she articles this issue so much more eloquently than I can. It’s not like I don’t want other people to have no sympathy, its just that I feel that if endometriosis were more well known, we might have had people rally around us more. Unlike my friend with cancer, who was lucky, I am never going to get better or win this battle. That’s not easy and deserves some sympathy right?
But over the past few weeks I’ve made some pretty good progress in this area, and am starting to feel much happier than a while back when I wrote this letter to my friends that I knew I would never send. It’s all down to Endometriosis Awareness Week actually that I decided to get pro-active. I started to tell some of my story on my Facebook, to raise awareness mainly, but also because I was feeling ready to get my experiences out into the world instead of hiding away. I wasn’t anticipating any particular response, but the one’s I’ve had have been really overwhelming and touching. I had lots of private messages of people sharing their own experiences, and saying they had been reading the links I’d posted and found them interesting. Other people left lovely comments on my posts which shows that actually, when you reach out, people do care. Quite a few others shared my posts onto their own accounts. My fiance’s best-friend, who is a ”typical bloke” even left this response which brought a small tear to my eye, and there were lots like this:
I also received some amazing surprise post for the first time since my diagnosis, in supportive anticipation of my hospital appointment. Stuff like that means more than I think the sender knows. Just knowing people really are there if you need them, and that they care about you really helps and gives you a reason to battle on. I was so down when I arrived home from the hospital, and having a big box of chocolate and card waiting for me really lifted me up. Also, that card is genius!:
These kind actions from some of my friends have led me to reflect on the other things that people do for me in my life. My mum and dad are always there to listen to and encourage me, and my mum copes so well with me phoning her in tears ALL THE TIME. That can’t be easy. My fiance is just so amazing in his unwavering support and I know how lucky I am to have someone who is willing to put up with and look after me every day. My friends can be really great when you ask them for help or advice, and I know that they want to be there for me but struggle to know how to be. And then I have one friend in my life who always goes the extra mile. After I was diagnosed she went out and bought some books on endometriosis so she could understand what I’m going through and how to support me, which I just thought was the best thing ever! Just having one friend like that is something to be truly thankful for.
So I will now do my best to stop moping about being alone, because clearly I am not. If you’re a bit of a type-A perfectionist like me your natural response will be the need for everyone in your life to be supportive and understanding, but that just isn’t realistic or possible. And I suppose I’ve learned that you can’t expect people to be psychic and understand what you’re going through if you don’t tell them. My advice for women with endometriosis feeling lost and alone would be to identify who is most likely to be supportive and to confide in them. And when you’re ready share your story with the people in your life if you feel comfortable and able to. They will be amazed at what you’ve been through and will think you’re ”a total bad-ass” as one of my colleagues put it the other day!
Because when we hide away, and get lost on our our own, we let that super-villain win. And we just can’t ever let that happen can we?! 🙂
I’m keen to hear about how well supported you feel by friends and family? Do you prefer your privacy or are you a sharer? Has compassion-fatigue set in? Or do you have any tips about talking endometriosis with non-sufferers?
Since my diagnosis I have been trying to navigate the minefield of telling my nearest and dearest about my endometriosis. It’s actually been much more difficult than I anticipated- although having never been seriously ill before I don’t actually have a previous model to base it on. As with 90% of things I do, I turned to my good friend Google beforehand to seek some practical advice on managing the situation. Some of the tips I came across seemed really sensible and useful, like:
Naturally, I ignored all of this good advice, and forged my own crazy path instead. I seem to have relied on three main approaches when telling people, which I have summarized below. I can’t particularly say I recommend any of them to you, but please feel free to learn from my mistakes.
Approach 1: The elusive explanation
This one, I am very sad to admit, probably stems from some shame I feel about what is happening to me, and worry that people will be dismissive of my problems if they know the truth. It’s probably not a very close friend who was targeted with this one, but somebody at least in my social sphere who I felt needed some sort of explanation for why I have been acting so strangely over the past few months. Also, it’s almost definitely a man. I have found that elusive explanations tend to go like this.
Friend: Are you OK?
Me: Um, I’m not feeling great lately, I’ve been struggling a bit since my surgery.
Friend: Still- really? Maybe you should go to your GP again. You should be fine again by now.
Me: I have. To be totally honest I know why I’m feeling crap. During my surgery they found out I have an incurable disease which causes inflammation and bleeding on my internal organs, and that is why I feel so unwell sometimes.
Friend: Oh right, that’s terrible. <awkward pause while they wait for more information>. Is it chrons disease?
Me: <panicking> YES! Er, yeah. Chrons. Grrrrrr horrible chrons.
Do not- I repeat DO NOT- tell people you have a disease that you don’t have. Even if you are panicking in the moment and are just agreeing with them. Telling people that, in fact, you don’t have that disease will make you look more mental than they already thought you are. If you don’t confess, you then have to put a lot of effort into maintaining the deception, like joining the Facebook support groups for Chrons and composing weekly posts, which is stress and hassle you just don’t need. (I promise I’m joking, I never did that bit :-)).
Approach 2: The emotional explanation
When confiding in close friends who have already been aware of many of the health problems I have been dealing with over the past few years, the emotional explanation tended to come out. In a way it is positive that you can trust these friends to be open with. Emotional explanations go like this:
Me: Dear friend, I need to talk to you about my surgery if that’s OK, well more about what was found.
Friend: Sure, what is it? I always have time for you.
Me: They found I have have severe endometriosis, which explains all the problems I’ve been having.
Friend: O.M.G that’s awful.What exactly is endometriosis?
Me: <Bursts into tears and cries hysterically for about an hour>.
This approach is a bad one because it puts that friend off ever asking you a question again, for fear of eliciting a meltdown. That friend will literally never acknowledge your endometriosis to your face again. Radical action is needed to address this. When I figure out what that action is I will update you all.
Approach 3: The over-share explanation
I can only assume this approach is the result of endometriosis induced insanity caused by sleep deprivation, medication, and crippling anger. This conversation genuinely happened in the pub with a large group of friends about a week after my laparoscopy.
Friend: Claire- how are you? I don’t think you’ve been around for ages?!
Me: Yeah, I’ve actually been off work having surgery.
Friend: Oh no- are you OK?
Me: Not really, basically loads of my internal organs are fucked and they said I’m probably not going to be able to have a baby.
Friends: Very. Awkward. Silence.
Another friend: You look nice though, have you had a manicure?
You’ll then just be regularly disappointed that none of these people have since approached you about what you’ve said, instead opting for the business as usual method. I also posted about my endometriosis on my Facebook account in what I think was a very polite and measured way. I have 352 friends on there. Three replied. THREE! Please learn this valuable life lesson my friend- over-sharing is not the way to go when explaining your endometriosis. Still, it’s good to have very conclusively proved that it makes people feel awkward. I am a scientist after all.
I wish I could just give all my close friends a letter, because I am clearly incapable of maintaining a normal adult conversation these days. I just want them to know how I feel, and be there for me. I need some extra support at the moment I think. I’d never actually be able to give them the letter though, I am way too British and reserved. But I drafted one anyway in the hope that it would be cathartic. Here it is:
I’m sending you this letter because our friendship over the years has meant so much to me, because I care about you, and because I truly see us being friends for many more years to come. However, over the past year you probably don’t feel that have been that great a friend to you- and that scares the life out of me. Friends really are very important to me. Perhaps you think I’ve become quite distant or disinterested in our friendship? Or maybe you think I’m depressing to be around, or boring because I rarely come out to social events anymore? I really wouldn’t blame you, I suppose I have been like that a lot of the time. But I want you know that I haven’t been acting like this because I don’t care about you, or about our friendship. Nothing could be further from the truth. You see, I’ve been feeling really unwell the last few years, and in August I was diagnosed with endometriosis. In some ways it is so good to have a diagnosis now, because I am hoping to use it to get the treatment I need to feel better. I know that you know this already, and I really appreciated how nice and sympathetic you were to me when I told you.
What I don’t think you know is how much endometriosis affects my daily life, and how difficult I am finding it to come to terms with my diagnosis. I know these things can be hard to hear, but please, let me tell you now. I think it will help both of us to move forward. I have stage IV endometriosis, which means that I have deep and widespread scarring on my uterus, ovaries, stomach, diaphragm, lungs, kidneys, bladder and colon. Because of this, I experience severe pain in my abdomen, rectum, back, shoulders, chest, neck, and face. This pain often lasts weeks at a time, and I find it really difficult to cope with life and get out and about when I’m having a ‘flare up’. For me, the disease also comes with an array of other symptoms which can be debilitating such as vomiting, diarrhea, headaches, and breathing difficulties. As my body tries to cope with these things and the inflammation they cause, it leaves me feeling constantly exhausted. Some days, I barely manage to get out of bed. This tiredness is unrelenting and nothing helps to get rid of it. This isn’t how I want to live or how I am used to being- I want to be full of beans again and live every day to the full. And to top things off, the severity of my endometriosis means there is a very real possibility that I am infertile. There aren’t words to tell you how much this breaks my heart. I try to push it to the back of my mind, but it is there every day just chipping away at me. I think Simon would be the most amazing dad, don’t you? Putting him through all of this makes me feel so guilty, and the fact that he is always so loving and supportive almost makes the guilt worse.
These things are so frightening to me and life just feels unbearably difficult at the moment, particularly as these problems are likely to stick around since endometriosis is a chronic condition with no cure. I’ve been crying a lot since I received my diagnosis, I think you’d be alarmed if you saw how much: all through the night, in the shower, at work in the bathroom, at my counselling sessions (I’m seeing a counselor- did you know that?), everywhere. I’m crying writing this. It’s why I work at home most of the time now- so people don’t see. My counselor thinks I have depression, and I probably agree. I think I am mourning the loss of the person I used to be. Remember her? Always the first to a social event, always laughing, super fit, and dreaming big for her future. I’m not that person anymore, and having endometriosis means I am going to have to change the way I do things sometimes. I need to live at a slower pace, but I won’t allow it stop me altogether. I’ve been feeling so alone with all of this fear and grief. Like nobody else cares about it. At times these feelings have overwhelmed and incapacitated me- I know how melodramatic that sounds but I need people to understand how just getting through each day is an immense physical, mental, and emotional challenge right now.
But I don’t want to feel this way anymore, which is why I am telling you all of this, because I know you care and wouldn’t want me to keep going on by myself. If you can find the strength to stand by me while I try to get to get the treatment I need to get back on track with my life that would mean so much to me. Perhaps you could come and visit me at home sometimes- especially when I am feeling too low or unwell to leave the house? If not, maybe we could chat on the phone- so I know you are there and thinking about me from time to time? At the very least, please don’t be offended or annoyed when I don’t turn up to social things or cancel at the last minute, it’s hurting me more than you that I can’t be there. When I am feeling well enough, I promise to be there with a smile on my face every time. The little things will make a big difference to me. And the same goes for you- I will promise to do my best to stay in touch, and am always here to talk if you need to. Things haven’t changed in that way.
Thanks so much for reading this letter, and I am so sorry that I didn’t have the courage to say this to you earlier or to your face. If you have any questions I would happily answer them any time. Questions show me that you are thinking about me and want to help. I think everyone has been to scared to ask me any-maybe because they want don’t want to upset me- but I’d love to talk about it with you if you feel able to.
All my love as always,
What do you think? How did you tell people? Any further wisdom in this area much appreciated. Also, I haven’t talked to most of my family about it yet- so advice on that topic welcome too.